20120911-20 Pre transplant blues

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TUESDAY 11 SEPTEMBER – Thankfully the weather is a little better. I have a gynae follow up appointment in the afternoon. They have analysed what was removed and it did have cancer cells forming. After an examination Doc declares me fit and well and over the next couple of weeks I can start to do more and he is ready to sign me off and says I can close this chapter in my medical life.
KEIGHLEY

WEDNESDAY 12 SEPTEMBER – As usual about 4 days after taking his 14 MTX chemo tablets Steve feels unwell. He finds it hard to describe but says he doesn’t feel like it’s his body but at the same time everything feels heavy. It’s a cold rainy day so I settle in to copying more home videos onto the laptop.
KEIGHLEY

THURSDAY 13 SEPTEMBER – Our 37th wedding anniversary and we have some cards, unusual as we don’t normally have a mailing address. A couple of weeks ago I got a deal on a room at Travelodge in Leeds, £22, and thought it would be nice for us to have the day and night in Leeds before Steve’s hospital appointment tomorrow. Unfortunately this didn’t take into account that Steve would still be feeling ill. In the afternoon we taxi to the station, £3, then buy train tickets to Leeds, £4.10. We arrive about 2.30pm and hop on the city loop bus, 50p, and alight near to Vicar Lane. Travelodge is very central and we have requested a quiet room and get one at the back. The room is huge, has a TV and tea and coffee making but is otherwise quite basic. We head off to check out restaurants in the area and with Steve feeling unwell he opts for a booking at Nash’s fish restaurant. We continue to the City Museum and Art Gallery and pass an hour or so looking round. Steve’s feeling a bit unwell on the walk back so I pop him on a bench and get a drink from a store nearby. We relax in the room until our meal at 7pm. Nash’s is very near the Grand Theatre and has early diners so when we arrive there are only 6 people left and we are alone by the time it closes at 8pm. It’s a huge medieval style banqueting hall and a predominantly fish menu and works for what we need at the moment. We’re back just after 8pm and relax watching TV. After 10pm we hear quite a disturbance outside and look out of our window to see a crowd gathered in the street below and a fire engine by the back door to the Grand Theatre seems there has been a fire alert as everyone hangs around for about half an hour before going back inside.
LEEDS, TRAVELODGE

FRIDAY 14 SEPTEMBER – Steve’s feeling considerably better as we head on the bus, £2, to St James Hospital. Dr Gilleece gives us more info about the transplant schedule but says it won’t all be confirmed until next Friday. Steve should be admitted on 27th or 28th September with transplant on 5th October and the week before as preparation. She recommends that from now until about 3 months after the transplant we limit Steve’s visitors to just Claire and David to reduce the chance of Steve getting an infection which could delay the transplant or later be life threatening. It’s a blow as we were hoping to see people over the next couple of weeks and have visitors during Steve’s 5 week hospital stay but we will do whatever is best for him. She also recommends we start the same “clean” diet that he will be on post transplant. We visit ward 89 and meet some staff. It’s all isolation rooms but without the ante room they had in Spain. They don’t like visitors to stay overnight unless the situation is dire. They also say Steve will feel pretty bad and may even have days when he doesn’t want me to visit in the first few weeks. All pretty scary stuff but this is a lifeline that we must do everything we can to make work and I am sure they are painting a worst case scenario. We arrive back early afternoon and I spend time notifying people that Steve won’t be seeing them until next year!
KEIGHLEY

SATURDAY 15 SEPTEMBER – The idea of isolating Steve was advice only so we chance things and pop round to Claire’s so that Steve can see Daniel and Natasha, then his Mom & Dads. We explain that in many ways this is much like us going away on a trip, except the motorcaravan is a room in a hospital without wheels, and we will be back early next year. Within reason there is no reason why I can’t still see people but I will have to be careful not to become a third party carrier. I shop at Morrisons for “clean” diet food and then get stuck into doing a load of laundry. They recommend everything to be washed at 60C and ironed to kill as much bacteria as possible so I kick off with our bedding. Being a bit over the top I know but can’t afford for Steve to get sick before he goes in. Steve’s feeling a bit down, think it is pre transplant blues, but I do manage to coax him into a lap of the Tarn in the afternoon and he also watches “The girl with the dragon tattoo” with me.
KEIGHLEY

SUNDAY 16 SEPTEMBER – Steve is totally resistant to getting out of bed. I wash sofa covers and cushions and clean windows inside and out and finally get him out of the pit at lunchtime. At least he is able to concentrate on things so we watch the dubbed version of “The girl who played with fire” and also play Scrabble. Reckon this retirement lark is pretty boring unless you are fit and healthy and have lots of interests. We retired to travel not to become couch potatoes so it doesn’t work for us !
KEIGHLEY

MONDAY 17 SEPTEMBER – We begin our week of medical appointments with me visiting the Doc. I just want reassurance that a patch of dark skin on my face, that is now growing and changing shape, is nothing serious and to find out if it can be removed or reduced. Think it is much more noticeable as I normally have a light tan but don’t this year! Doc is not overly concerned but wants to do blood tests including one to see if I am anaemic – here we go again! Today we watch an old BBC series “The Shadow Line” thinking I have all 3 episodes. It’s a very involved murder mystery but at the end of episode 3 we realise it is nowhere near over. Thank goodness for nephew Bobby who says he can get me the other 4 episodes.
KEIGHLEY

TUESAY 18 SEPTEMBER – I do more research on line about the bone marrow transplant and come across an interesting blog with video diaries from a guy called “Baldy” which gives me more idea what to expect. I also learn that 3 things make a big difference to the transplant outcome – 1/ having it done at a national transplant centre with a good Doctor, check. 2/ having a good donor, lads in their 20’s being the best choice, check. 3/ having the attitude that you are going to get through it, almost check and working on the few bits of doubt that Steve has. I talk to Steve about this in an effort to shake him out of his lethargy and work with me in keeping up his physical and mental well being and it seems to sink in. Helen from BRI calls and I tell her about my concerns for Steve and she disagrees with the isolation advice from Leeds and says to take it on balance against the benefits of seeing family and friends whilst taking precautions. After lunch I walk down town then meet Steve at “The Oaks” clinic where his is having another ultrasound treatment on his shoulder. In between showers we manage to get out and take a walk around the block.
KEIGHLEY

WEDNESDAY 19 SEPTEMBER – Steve’s 58th birthday and having a home address he gets loads of cards including many humorous ones. We both have hospital appointments today so he drops me at the train station to go to the Leeds Dental Clinic whilst he goes to BRI for a bone marrow extraction. As usual I have been passed to a different department who insist on using the first appointment for a thorough check up then booking me in later or the filling. At least the check up involves a thorough clean by a hygienist and an enlightening dental regime lesson. Steve’s picks me up from the station where we compare notes. Dr Ackroyd was amazed how well Steve looked having not seen him for a few weeks. This was to be his last pre transplant appointment at BRI but Helen says she is still there if ever we need to chat or get advice. Dr Ackroyd takes Steve off the chemo tablets and reduces the dose of another drug so he is now down to 3 drugs morning and night which should make him feel better. Steve’s had a few presents today including a big Russian style fur hat from David, and hospital pyjamas from me and even one from the Police. A letter saying that due to the circumstances outlined in our letter (we explained that he has leukaemia and was on his way to transplant consultancy etc) they are dropping the case. Claire is taking us out for a meal and we meet at The Tramshed in Shipley. She has had a special Liverpool card for Steve. Richard joins us and we have a lovely meal and chat. Claire has had an offer on her house and they now have to decide what to do as the ones they were hoping to rent have all gone. The evening seems to brighten Steve up and I do feel he is being more positive now. Just wish the weather would help. When we arrive back Lisa and Mick have surprised us by calling round to drop off another humorous card, unfortunately Mick is not well so they don’t stop to visit.
KEIGHLEY

THURSDAY 20 SEPTEMBER – We’re woken by a workman dropping of scaffolding. We’ve got some ridge tiles missing and they are going to be fixed. Mid morning another band of workers arrive to erect the scaffolding, the fixers will come another day – so glad we are not paying. I call in at Mom and Dad’s whilst Steve goes for his ultrasound treatment. Wish we could fit in more walking but the weather is awful and we even have the central heating on. How are we ever going to cope with this winter in England I wonder?
KEIGHLEY